Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Mark, I was on home PD. I had unusual complications that preclude me from answering your first question with my experience. One should feel very well the next morning. I returned to work 6 weeks after starting PD. There were a lot of trips to the center for training and tests. One first learns manual PD and is on that for a while before learning and switching to the overnight cycler PD machine. The " trigger " in the US is a kidney function of 15% for diabetics and 10% for non-diabetics. However, neph's also base dialysis initiation on how the patient is feeling, functioning, etc. Marty, Rialto CA, 41 years old. (We are almost neigbors). > Anyone out there doing at home PT dialysis? Wondering how you feel > the morning after? How soon after starting the process can you go > back to work? What was the trigger that made your Neph decide to go > on dialysis? > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 ---Thanks for the quick response. 6 weeks it took to get back to work? ouch,, not planning on that... In iga-nephropathy , " mrbluize2003 " <mrbluize2003@y...> wrote: > Mark, > > I was on home PD. I had unusual complications that preclude me from > answering your first question with my experience. One should feel > very well the next morning. I returned to work 6 weeks after > starting PD. There were a lot of trips to the center for training > and tests. One first learns manual PD and is on that for a while > before learning and switching to the overnight cycler PD machine. > > The " trigger " in the US is a kidney function of 15% for diabetics > and 10% for non-diabetics. However, neph's also base dialysis > initiation on how the patient is feeling, functioning, etc. > > Marty, Rialto CA, 41 years old. (We are almost neigbors). > > > > > Anyone out there doing at home PT dialysis? Wondering how you > feel > > the morning after? How soon after starting the process can you go > > back to work? What was the trigger that made your Neph decide to > go > > on dialysis? > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Mark, Normally the IgAN process in the transplanted kidney is slow enough that the transplanted kidney lasts the rest of the recipient's life. There are some occasions where a second transplant becomes necessary years later, but that is the exception. In a message dated 2/1/2004 10:39:53 AM Pacific Standard Time, mmckeown64@... writes: > ---I have been questioning; why a transplant if there is a 100% > chance of infecting the new kidney with IGA? Is it worth the diet > and trauma and meds to get the transplant just to be disappointed > again when blood shows up again? Or does the new kidney take a long > time to be infected, so that it is really not a factor to worry > about? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Mark, I did PD about a year ago before my transplant. You normally feel fine in the morning when you wake up there are no real negative effects. I worked up to dialysis took a week or so off for the surgery to implant the catheter then went back to work during training and then just started one day and went to work the next morning. My creatine had reached 14 in us numbers and he was worried I was just going to pass out one day from the amount of toxins in my body. I still felt relitavely fine. You can go to www.igan.ca, click on igan cafe, then dialyis and transplant, the 's Dialysis Journal to read all about my experiences in PD in detail. Pierre also has his Hemo-Dialysis story there and be both have our experiences regarding transplant evaluations and my transplant. (We are all hoping yours comes along soone Pierre) > Anyone out there doing at home PT dialysis? Wondering how you feel > the morning after? How soon after starting the process can you go > back to work? What was the trigger that made your Neph decide to go > on dialysis? > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Mark, I did PD about a year ago before my transplant. You normally feel fine in the morning when you wake up there are no real negative effects. I worked up to dialysis took a week or so off for the surgery to implant the catheter then went back to work during training and then just started one day and went to work the next morning. My creatine had reached 14 in us numbers and he was worried I was just going to pass out one day from the amount of toxins in my body. I still felt relitavely fine. You can go to www.igan.ca, click on igan cafe, then dialyis and transplant, the 's Dialysis Journal to read all about my experiences in PD in detail. Pierre also has his Hemo-Dialysis story there and be both have our experiences regarding transplant evaluations and my transplant. (We are all hoping yours comes along soone Pierre) > Anyone out there doing at home PT dialysis? Wondering how you feel > the morning after? How soon after starting the process can you go > back to work? What was the trigger that made your Neph decide to go > on dialysis? > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Mark, I did PD about a year ago before my transplant. You normally feel fine in the morning when you wake up there are no real negative effects. I worked up to dialysis took a week or so off for the surgery to implant the catheter then went back to work during training and then just started one day and went to work the next morning. My creatine had reached 14 in us numbers and he was worried I was just going to pass out one day from the amount of toxins in my body. I still felt relitavely fine. You can go to www.igan.ca, click on igan cafe, then dialyis and transplant, the 's Dialysis Journal to read all about my experiences in PD in detail. Pierre also has his Hemo-Dialysis story there and be both have our experiences regarding transplant evaluations and my transplant. (We are all hoping yours comes along soone Pierre) > Anyone out there doing at home PT dialysis? Wondering how you feel > the morning after? How soon after starting the process can you go > back to work? What was the trigger that made your Neph decide to go > on dialysis? > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 ---I have been questioning; why a transplant if there is a 100% chance of infecting the new kidney with IGA? Is it worth the diet and trauma and meds to get the transplant just to be disappointed again when blood shows up again? Or does the new kidney take a long time to be infected, so that it is really not a factor to worry about? In iga-nephropathy , " " <sixteneighty@y...> wrote: > Mark, > > I did PD about a year ago before my transplant. You normally feel > fine in the morning when you wake up there are no real negative > effects. I worked up to dialysis took a week or so off for the > surgery to implant the catheter then went back to work during > training and then just started one day and went to work the next > morning. My creatine had reached 14 in us numbers and he was worried > I was just going to pass out one day from the amount of toxins in my > body. I still felt relitavely fine. You can go to www.igan.ca, > click on igan cafe, then dialyis and transplant, the 's > Dialysis Journal to read all about my experiences in PD in detail. > Pierre also has his Hemo-Dialysis story there and be both have our > experiences regarding transplant evaluations and my transplant. (We > are all hoping yours comes along soone Pierre) > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > feel > > the morning after? How soon after starting the process can you go > > back to work? What was the trigger that made your Neph decide to > go > > on dialysis? > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 ---I have been questioning; why a transplant if there is a 100% chance of infecting the new kidney with IGA? Is it worth the diet and trauma and meds to get the transplant just to be disappointed again when blood shows up again? Or does the new kidney take a long time to be infected, so that it is really not a factor to worry about? In iga-nephropathy , " " <sixteneighty@y...> wrote: > Mark, > > I did PD about a year ago before my transplant. You normally feel > fine in the morning when you wake up there are no real negative > effects. I worked up to dialysis took a week or so off for the > surgery to implant the catheter then went back to work during > training and then just started one day and went to work the next > morning. My creatine had reached 14 in us numbers and he was worried > I was just going to pass out one day from the amount of toxins in my > body. I still felt relitavely fine. You can go to www.igan.ca, > click on igan cafe, then dialyis and transplant, the 's > Dialysis Journal to read all about my experiences in PD in detail. > Pierre also has his Hemo-Dialysis story there and be both have our > experiences regarding transplant evaluations and my transplant. (We > are all hoping yours comes along soone Pierre) > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > feel > > the morning after? How soon after starting the process can you go > > back to work? What was the trigger that made your Neph decide to > go > > on dialysis? > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 ---I have been questioning; why a transplant if there is a 100% chance of infecting the new kidney with IGA? Is it worth the diet and trauma and meds to get the transplant just to be disappointed again when blood shows up again? Or does the new kidney take a long time to be infected, so that it is really not a factor to worry about? In iga-nephropathy , " " <sixteneighty@y...> wrote: > Mark, > > I did PD about a year ago before my transplant. You normally feel > fine in the morning when you wake up there are no real negative > effects. I worked up to dialysis took a week or so off for the > surgery to implant the catheter then went back to work during > training and then just started one day and went to work the next > morning. My creatine had reached 14 in us numbers and he was worried > I was just going to pass out one day from the amount of toxins in my > body. I still felt relitavely fine. You can go to www.igan.ca, > click on igan cafe, then dialyis and transplant, the 's > Dialysis Journal to read all about my experiences in PD in detail. > Pierre also has his Hemo-Dialysis story there and be both have our > experiences regarding transplant evaluations and my transplant. (We > are all hoping yours comes along soone Pierre) > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > feel > > the morning after? How soon after starting the process can you go > > back to work? What was the trigger that made your Neph decide to > go > > on dialysis? > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Mark, I can only think of two alternatives to transplant: dialysis (which presents more many more problems than transplant) and death. I think anyone here would do the transplant! Many, many, many patients get 10-15 good years - if not more - out of thier new kidneys. Even with diseases such as MPGN and FSGS where loss of the kidney due to recurrence is very high in the short term - transplant is still a preferred treatment. Cy Re: PT Dialysis > ---I have been questioning; why a transplant if there is a 100% > chance of infecting the new kidney with IGA? Is it worth the diet > and trauma and meds to get the transplant just to be disappointed > again when blood shows up again? Or does the new kidney take a long > time to be infected, so that it is really not a factor to worry > about? > > In iga-nephropathy , " " <sixteneighty@y...> wrote: > > Mark, > > > > I did PD about a year ago before my transplant. You normally feel > > fine in the morning when you wake up there are no real negative > > effects. I worked up to dialysis took a week or so off for the > > surgery to implant the catheter then went back to work during > > training and then just started one day and went to work the next > > morning. My creatine had reached 14 in us numbers and he was > worried > > I was just going to pass out one day from the amount of toxins in > my > > body. I still felt relitavely fine. You can go to www.igan.ca, > > click on igan cafe, then dialyis and transplant, the 's > > Dialysis Journal to read all about my experiences in PD in detail. > > Pierre also has his Hemo-Dialysis story there and be both have our > > experiences regarding transplant evaluations and my transplant. (We > > are all hoping yours comes along soone Pierre) > > > > > > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > > feel > > > the morning after? How soon after starting the process can you > go > > > back to work? What was the trigger that made your Neph decide to > > go > > > on dialysis? > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Mark, I can only think of two alternatives to transplant: dialysis (which presents more many more problems than transplant) and death. I think anyone here would do the transplant! Many, many, many patients get 10-15 good years - if not more - out of thier new kidneys. Even with diseases such as MPGN and FSGS where loss of the kidney due to recurrence is very high in the short term - transplant is still a preferred treatment. Cy Re: PT Dialysis > ---I have been questioning; why a transplant if there is a 100% > chance of infecting the new kidney with IGA? Is it worth the diet > and trauma and meds to get the transplant just to be disappointed > again when blood shows up again? Or does the new kidney take a long > time to be infected, so that it is really not a factor to worry > about? > > In iga-nephropathy , " " <sixteneighty@y...> wrote: > > Mark, > > > > I did PD about a year ago before my transplant. You normally feel > > fine in the morning when you wake up there are no real negative > > effects. I worked up to dialysis took a week or so off for the > > surgery to implant the catheter then went back to work during > > training and then just started one day and went to work the next > > morning. My creatine had reached 14 in us numbers and he was > worried > > I was just going to pass out one day from the amount of toxins in > my > > body. I still felt relitavely fine. You can go to www.igan.ca, > > click on igan cafe, then dialyis and transplant, the 's > > Dialysis Journal to read all about my experiences in PD in detail. > > Pierre also has his Hemo-Dialysis story there and be both have our > > experiences regarding transplant evaluations and my transplant. (We > > are all hoping yours comes along soone Pierre) > > > > > > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > > feel > > > the morning after? How soon after starting the process can you > go > > > back to work? What was the trigger that made your Neph decide to > > go > > > on dialysis? > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Mark, I will put in a link for you on SSI, but I am not sure about state disability. http://www.ssa.gov/disability/professionals/bluebook/6.00-Genito-Urinary-Adult.h\ tm I do not believe handicap placards would be available since dialysis does not impact mobility. I would ask to speak to a social worker at the hospital who can direct you to resources. Perhaps your VP might consider letting you work on a part time basis for a while? I have one friend who continued to work full time through her PD up until she got her transplant, so it can be done. I will be praying for you for your surgery on Tuesday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Mark, Cy and have already answered the question but let me say as someone who has IGA and had a transplant that if I had to give up my transplant tomorrow that I would still do it all over again without a single thought otherwise. I am thankful each day that I can live a normal life again and though I'm pretty sure that I'll have to have another transplant someday it sure beats being on dialysis anyday. Sure the IGA will probably recur in the new kidney, but the chances of it being the cause of the new kidney to fail is so small that it is definitely worth it. I told someone right after my transplant that if I had to do it once a year for the rest of my life I would, it's just that great. > > > Anyone out there doing at home PT dialysis? Wondering how you > > feel > > > the morning after? How soon after starting the process can you > go > > > back to work? What was the trigger that made your Neph decide to > > go > > > on dialysis? > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 ---I thank everyone for their comments and information. I go in on Tuesday to schedule my catheder insertion. your journal was very insightful, I hope my experience pales in comparison to yours. I somehow think this will not change the way I work, but after reading your journal it seems as though I am in for some surprises. You are only 23 but you have a lifetime of information and experience, your parents and you should be proud. I have expecting this day in the back of my mind since I learned of my disease back in 1985; I guess I never gave it much thought of ESRD, I thought I would be the one it would not effect. But here I am struggling to figure out what to do next.... How many people continue to work their normal work and how many go on disability. I cannot see me missing too much work and still maintaining the trust and respect of my Vice President. I am heavily relied upon to complete projects and to make things happen at work. I do not want to give that up, but at the same time I do not want to put the VP in a position of failure... Does anyone get State Disability, Handicap Placards? SSI? Just wondering? In iga-nephropathy , " " <sixteneighty@y...> wrote: > Mark, > > Cy and have already answered the question but let me say as > someone who has IGA and had a transplant that if I had to give up my > transplant tomorrow that I would still do it all over again without > a single thought otherwise. I am thankful each day that I can live a > normal life again and though I'm pretty sure that I'll have to have > another transplant someday it sure beats being on dialysis anyday. > Sure the IGA will probably recur in the new kidney, but the chances > of it being the cause of the new kidney to fail is so small that it > is definitely worth it. I told someone right after my transplant > that if I had to do it once a year for the rest of my life I would, > it's just that great. > > > > > > > > > Anyone out there doing at home PT dialysis? Wondering how you > > > feel > > > > the morning after? How soon after starting the process can > you > > go > > > > back to work? What was the trigger that made your Neph decide > to > > > go > > > > on dialysis? > > > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Right on . Marty > > > > Anyone out there doing at home PT dialysis? Wondering how you > > > feel > > > > the morning after? How soon after starting the process can > you > > go > > > > back to work? What was the trigger that made your Neph decide > to > > > go > > > > on dialysis? > > > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Amen, . I'd do it over again as many times, if the result was how I feel now. It's an incredible feeling to wake up from surgery and have this incredible surge of energy. And dialysis, although it is tolerable, is not how I would choose to live for the rest of my life. And how wonderful that we do have the choice to make. Take care. > > > > Anyone out there doing at home PT dialysis? Wondering how you > > > feel > > > > the morning after? How soon after starting the process can > you > > go > > > > back to work? What was the trigger that made your Neph decide > to > > > go > > > > on dialysis? > > > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi Mark, I'm sure you have already gotten great advice from everyone else, especially by reading 's journal, on PD. I did PD for 3 months following up to my transplant on Dec 15th. I had a decent amount of energy during that time, although I did not work because I was receiving disability payments. But definitely, if you have to choose between dialysis or transplant, transplant is the way to go to get back to a normal lifestyle. And hey, no more phosphate binders during meals :)Good luck to you. > > > Anyone out there doing at home PT dialysis? Wondering how you > > feel > > > the morning after? How soon after starting the process can you > go > > > back to work? What was the trigger that made your Neph decide to > > go > > > on dialysis? > > > > > > Wondering how it all works? Mark in Hemet, CA. 39 year old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 I've never met or talked to anyone who didn't recommend a transplant without reservation. Dialysis keeps you alive, but, while I always try to emphasize the positive, it can't even come close to competing with having some real kidney function. Picture forever being at about 10% kidney function, and that's a good illustration of dialysis, compared to having normal kidney function restored. Every nephrologist you will ever meet will tell you that a kidney transplant is the treatment option of choice for IgAN patients who reach esrd. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hi Mark, You also have a very full plate with your Mother-in-law. Please accept my condolences on her cancer. She is blessed to have you and Gisselle taking care of her in her final days. That is a very difficult thing to watch a loved one go through that. My heart goes out to you. I am praying for your strength and to feel God's peace during this difficult time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Hi Mark. I wouldn't wish kidney failure on my worst enemy, of course, but in a way, I'm always glad to hear people are getting the attention they need if they have it. I thank God that medical science has made it possible for us to survive and continue with a normal life (normal, with some adjustments, but comparatively normal overall). Along with the hundreds of thousands of people on dialysis or who have had a transplant, I'm reminded of the untold numbers of people in the world who still do not have access to adequate treatment and who must face the inevitable. We are lucky to be living in countries rich enough to be able to provide dialysis and transplants, and we are lucky to be living today as opposed to even just 30 years ago. I had my dialysis last evening, and it went well, as it usually does. This morning though, I feel like I've been runover by a steam roller in a Wile E Coyote cartoon. Why? I don't know. It's just one of those things. Once I get moving and have my breakfast and coffee, it gets better. Interestingly, my dialysis centre is also in a hospital called the Riverside. I guess that's probably a fairly common name for various institutions in North America. The most striking coincidence though, is that my mother-in-law died of pancreatic cancer in 1993. She was only 56, diagnosed 1 week after I had my kidney biopsy, and gone 4 months later. I can only imagine how hard it must be to deal with a situation like that and with starting dialysis at the same time. Good luck with the catheters. Pierre Re: PT Dialysis > Thanks to this site and the people sharing their information I will > go ahead with a transplant. > Today I had my PD catheder surgery scheduled for Feb 20. Was not > feeling well so I went to my Neph, he chose to send me to Riverside > tomorrow and get a catheder for Hemo Dialysis, So I guess I will be > having all of the benefits of modern science in one month. > I thank god for the strength he has given my wife Giselle, she is > putting up with my disease as well as losing her mother to cancer > very shortly. She is living with us and pancreatic cancer, 6 months > ago a beautiful strong thriving 58 year old woman, no barely hanging > on unable to communicate. This is truly a sad month in our lives. > > Thank you Pierre and and all the others that keep this site > going. > Talk at ya all later > Mark-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Mark, I am so sorry about your mother in law. I am inspired by how you can handle yourself with such a full plate. I am glad you found us, and that you are going to go ahead with a transplant as well. You and Giselle are in my prayers. > Hi Mark, > > You also have a very full plate with your Mother-in-law. Please accept my > condolences on her cancer. She is blessed to have you and Gisselle taking care > of her in her final days. That is a very difficult thing to watch a loved one > go through that. My heart goes out to you. > > I am praying for your strength and to feel God's peace during this difficult > time. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Mark, I am so sorry about your mother in law. I am inspired by how you can handle yourself with such a full plate. I am glad you found us, and that you are going to go ahead with a transplant as well. You and Giselle are in my prayers. > Hi Mark, > > You also have a very full plate with your Mother-in-law. Please accept my > condolences on her cancer. She is blessed to have you and Gisselle taking care > of her in her final days. That is a very difficult thing to watch a loved one > go through that. My heart goes out to you. > > I am praying for your strength and to feel God's peace during this difficult > time. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Mark, I am so sorry about your mother in law. I am inspired by how you can handle yourself with such a full plate. I am glad you found us, and that you are going to go ahead with a transplant as well. You and Giselle are in my prayers. > Hi Mark, > > You also have a very full plate with your Mother-in-law. Please accept my > condolences on her cancer. She is blessed to have you and Gisselle taking care > of her in her final days. That is a very difficult thing to watch a loved one > go through that. My heart goes out to you. > > I am praying for your strength and to feel God's peace during this difficult > time. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Hi Pierre, I am sorry you felt so bad this morning. I do hope you felt better as the day went on. Quote Link to comment Share on other sites More sharing options...
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